It’s normal to feel lots of different emotions when you finish cancer treatment. Macmillan are here to help.
The Online Community is a place where you can share experiences and peer support with people going through the same thing. In addition to the Community, you might be looking for further support so you can feel more like yourself again.
In today’s Community News Blog, our Online Community member Wellspring shares their experience of HOPE. HOPE, which stands for ‘Help to Overcome Problems Effectively’, is a course developed by Coventry University and Macmillan Cancer Support to help people who have had or have cancer to get on with their lives.
We will now hand over to Wellspring to tell you all about their experience.
“It was winter 2019. 12 months experiencing 6 rounds of FOLFOX, 3 major operations, emergency surgery, and now another 6 bouts of FOLFOX. I was exhausted, having daily naps, managing a stoma, and isolated at home to avoid winter coughs and colds. And then I enrolled on the local HOPE course.”
The course was developed jointly by Macmillan with Coventry University and run by trained and assessed course facilitators.
“What 3 words would you use to describe your feelings today?”
Mine were “lost control, tired out, anxious”.
Our word cloud emphasized “tired, anxious, scared, & frustrated”.
Cancer, the great leveller, brought together around eight of us. Just the one man turned up, two having backed off before we’d even started. They missed so much. What happens in the room stays there, so this is a personal, private memoir. We were each at a staging post of treatment. Some hoped for healing after a clear scan. Others knew that containment is all they could hope for. Most kept going for all 6 sessions.
“We never talked about our cancer or the treatment. Or the side effects. It was all about moving on - whether leaving cancer behind, living with cancer, or living despite cancer. We were raw.”
The sessions were interactive, reflective, active and, much to the frustration of our partners, strictly private. We didn’t ignore the cancer but treated it as our context, not the issue. The course helped us focus on everything but the cancer. It addressed fears for and about the future: by doing so, we kept the past in the past.
HOPE helped turn us around: we arrived glued to our past and left with a future. We learned to wrest control from our subconscious thoughts and emotions by activating our consciousness. Thoughts drowning out negative emotions.
“Nobody knows what it’s like to be me. But the Hopers understood. Safe. Non-judgemental. Empathic vs sympathetic. Knowing it stays in the room gave us freedom, the space to open up more each week.”
I didn’t recognise myself: thinning hair, operation scars, stoma, neuropathy, aged, & emotionally fragile. I’d been treated with kid gloves, at a distance, and left out. But the Hopers engaged with me as I was, not as I had been. They saw good things in the present, despite the cancer; some fertile ground for growth.
Yes, I still worried about leaving loved ones behind. I hated being a burden to my wonderful spouse. Cancer never goes away - it invaded our lives, never to disappear. But the course helped me identify priorities in light of cancer. To differentiate between the rocks, pebbles, and sand in my life, and to emphasise the rocks.
I named them: family, friends, being useful, generating good memories, the natural world, fitness & health, new experiences, challenging ideas, new information, stories, a sanctuary, & nice food. There was and is plenty left, even allowing for what’s gone. I had the chance to take back some control where I could. And learned to accept what I couldn’t.
"Meanwhile, we were reminded today [after hearing the cancer had returned] that we have to live with cancer, live with uncertainty, and learn to accept that our lives are unlikely ever to be completely free of this horrible disease. We don’t want to be defined by it and need to learn how to park our thoughts and feelings, to keep them in the background, and to live in the moment. Not to let our tomorrows rob us of our todays. With your help and support, this journey will be easier. Thank you again for walking with us." - an extract from Wellspring’s blog, “faithful companions”
Sadly, Covid arrived as we were finishing the course. And further bonding over coffee never happened. Yet HOPE was so worthwhile and I learned loads from the Hopers – “never give up”. Stay positive. Apply the tools we were taught. By the end, my three words had become, “tired, (but) ready & energised”. As a group we still felt tired but also “supported & emotional”, and much more positive. It’s clear that leading a course is both demanding and satisfying, facilitating the progress Hopers make. It would be great if more cancer patients chose to benefit from HOPE, and the carers’ version was more widely available.
What has left its mark 3 years on? Raisin meditation with N’s gentle northern accent. A mindful approach to life, including photography. I’m still as inquisitive and interested as ever, engaged with the world, in the moment. I’m learning to accept the setbacks as part of the journey, accentuating the positive and allowing distractions to wash away worrying.
Journeying with love is so significant – divine love, and that of family, companions, and friends – and carries us through the darker times, while celebrating those good moments we crave.
And a new motto: “Do what you love, and love what you do”.
Every Blessing,
Wellspring - April 2023
I hope it’s been helpful for you to hear Wellspring’s experience with the HOPE course. If you’d like to find out more about Wellspring, you can find their Community profile here.
Looking for information from Macmillan about your emotions after treatment? The following links might be helpful:
Beginning to recover – with links to HOPE and other resources
HOPE course information and contact details
HOPE course leaflet for patients
HOPE course relaxation resources:
Any questions? Comment below or email the Community team at community@macmillan.org.uk
